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Author
Topic: Introduce yourself (Read 154492 times)

It's really good to have this forum for those of us who have been been positive for many years, survivors all.

Even though many of us here know of each other and many are friends too, I thought it might be good as a means of introduction to share some basic information. There will be many folks reading this forum who would like to know about us long term positives/survivors. I'll kick it off.

I'm 48 years old. I tested positive in 1985 though likely became infected in 1981 while living in NYC. I am not on medications for HIV though I am for bi-polar disorder.

I am American, though I have been living in a small coastal town outside of Melbourne, Australia for 4 years. I have been a ballet dancer and chef and have written poetry and essays as well. I also create environmental found art. Last year I started a Farmers Market in our town. My partner (who is negative) and I have been together for 5 years.

Howdy all, My name is Rodney, I'm 51, was diagnosed with HIV in 1984, a long term non progress-er until 2005. Hospitalized with Disseminating Histoplasmosis. Started meds in April 2005. Still fighting Histo. I'm a retired firefighter/paramedic and truck driver.

My name is Ray. I am 55 years of age. Originally, I am from Western New York, just north of Buffalo. I now reside in west central Florida.

I moved to Florida in May of 1980. I met my current partner( Ed )in July of 1980. In 1985 I was diagnosed HIV positive. Ed remains HIV negative.

I was also, a long term non-progressor. I began medication in October of 2003. I probably should have started medication around 2001. I remain employed at this point in my life, and hope to continue, with my employment for some time... But, it can be a struggle at times.

I'm 47, and tested Poz in September of 1988. My doctor called me into his office and said: Well this isn't the kind of news I like to give anybody, but .... He then proceeded to tell me I was looking at a life expectancy of six months or so.

I had clues for a long time that I was likely infected, so although I was sort of prepared, it still shook me up. Especially that prognosis. This was of course still the 1980s.

I very stupidly declined protease inhibitors for years, until November of 2002 when I collapsed in line at a checkout of a grocery store. My viral load was more than 500,000 at that point, and HIV had hijacked me, as my doctor likes to put it.

I ended up spending two days in a hospital emergency department. I don’t remember the collapse or much about my hospital stay except that I woke up and saw this "thing" in my hand (IV) and promptly removed it. My ex Ken says I also went wandering outside one night, upsetting the nursing staff even more. I wonder where I was going? When they started talking about putting me in their psychiatric ward, Ken signed me out and took my home to the condo and stayed with me a week to make sure I got on my regime of meds properly. Afterwards, he also made me phone him every morning and evening to report I'd taken the pills.

I’ve been taking Kaletra (lopinavir and ritonavir) with Combivir since then.

I’ve been in love with a man for almost three years now - Jim - who is HIV negative. And prior to that was with Ken for ten years (also HIV negative.)

I took early retirement not long after my diagnosis and am busier now than when I worked I think. I am never ever bored. Life is too full for that.

hello, my name is mark and i live in new hampshire. diagnosed in '83 when i was 29. being young and fairly intelligent i asked the doctor what he felt my prognosis was. well, he blurted out 'you will become very ill and die within one year.' so fast forward 24 years, i'm 53 and just had to renew my drivers license last week. so with the balding and hair cuts too short to dye any longer i had to be honest and put my hair color as gray. to think i could have died young and left a beautiful corpse.

My name is Bob, and I live in rural Indiana. I have lived in the same house for 15 years, just 3 houses away from my Mom. My Dad passed away in late 2005 from cancer. I am the youngest of 3 boys, and I just turned 53.

I worked most of my life as management in the service industry, but the last 10 years of my working life was in finance. I am currently on disability from SS.

I am the father of 2 boys, 20 & 22, who both live at home. My closest friend and wife just recently moved in with us to be my caretaker. Add in 2 dogs and 1 queen of the house cat, and I have a great support system in place.

I tested positive in 1988, about a year and a half after my youngest was born. My wife and I separated and the kids stayed with me, and have been with me since. A costly, bitter, news making, welfare interfering, divorce and custody battle, for a gay man with HIV in a small town, was my introduction to this disease. In late 89 a very educated judge granted me full custody.

In 1999 with an upgrade from positive I started treatment until 2006 when my other options needed to be weighed out. This option ended up being nature taking its course. I entered this phase last August. It was the hardest soul searching, educated decision I every made in my life. As each day passes, as the body and mind takes another hit, I still am confident in my position with this battle. Even if my weapons have decreased, I still am fighting in my own special way.

My name is David. I'm 42, was diagnosed in '93 at age 28 but that was the first time I ever took an HIV test and as I was below 200 cd4 I'd say I was infected around the years of '87-'89. As such I barely had to time to catch my breath before going on HIV medication, and have been on handfuls of practically everything available since then. My numbers are really good now, but the first 10 years they were not and consequently I have resistance to a great deal of meds.

I lived for 15 years in NYC during all of this, and only recently moved to Philadelphia 2 years ago. I'm pretty much eternally single and have dealt with all of this medical drama on my own (excepting a few years), though I'm now out with it all with my family and they're super great and supportive.

I'm a feisty fighter with HIV and I don't plan on giving up anytime soon.

Hi my name is Odis but everyone calls me Ody. I was diagnosed with HIV in March 1986, but was infected between Thankgiving 1985 and January 1986 at the age of 16, living a small farm town In SW. Michigan aka Michiana area. The youngest of 3 and only male. My status changed to AIDS in 1987. I am now 37.

My local family is somewhat supportive, I should say my mother, step father, and nephew. My father died in 1999 believing I was negative and the doctors where wrong cause everyone knows Hiv/Aids kills you in 2 years. I converted my step father's homophobia, Aids-phobia. My nephew begs me to keep living, he and his wife even let me name their first child. My non-local family are more supportive, with my 2 nieces are both involved with health care due to me, one didn't like the way I was treated by nurses in the hospital, is now a nurse working with HIV/AIDS patients, and her sister, not liking the way my blood was drawn in the hospital, became a phlebotomist.

I have a negative partner of 5 years, my ex who is now my care giver when I let him, and my 2 dogs living with me in my mobile home I have owned for 6 years.

I worked in a nursing home till a leak of information by a receptionist at the doctor's office made way back, I refused to release my medical records and was effectively fired. I landed a great deal and purchased a vintage diner that was sold by my family when I started having uncontrollable seizures and was released from medical care to 'go home and die in comfort'. When they stopped and I learned to read, write, walk, and talk again, I managed to do well in creative real estate investments. I am currently getting SSDI, working feverishly recovering as much of 'me' as I can after my last life threatening illness in Augest 2005.

Now living over half my life with this virus I look back and say "It's been one hell of a journey but what a ride! Now, when and where is the next pot hole?" I enjoy doing what was said couldn't be done, living!

Hope I didn't repeat anything I have placed in other posts...

Peace health and love,Ody

Logged

Take a deep breath and forgive yourself, no since in you making it harder, that's someone else's job and you know they are more qualified, just ask um!

I was infected when I was 21 while in a relationship with a guy who knew he was positive but he chose not to tell me until a condom broke. Unfortunately for me that one occasion was enough to get infected. I stayed with him after my diagnosis but he later developed AIDS related dementia and had to move into a hospice until he died in May 1993.

I grew up mainly in rural England (Herefordshire) but moved to London to finish my degree and never left. I have lived in Chelsea for over 13 years and share my flat with my cat.

I have worked throughout my diagnosis - ten years in local government and since 2002 running my own consultancy business, mainly providing HIV education in schools.

I have only spent a total of 22 months out of the last 16 years on meds for HIV and am currently on another break of 18 months and counting.

I do not know what the future holds but I am thankful for every extra day of life I'm getting and try to make sure I enjoy it.

Hi, I'm Christine. I was diagnosed in '93, (I think) infected in late '91. I have been married for 13 years, he is negative. I have a pan resistant virus. Resistant to everything except Viread. My tcells dropped below 200 almost right away, and have been there ever since. I have not had much success with the meds, but managed to do well until 2001.

I was standing in my kitchen on a Sunday afternoon, and felt funny...like all my energy was being pulled out of my feet. It was a very odd feeling. I remember being in the ER, and walking back to the room to be seen by the doctor, and then I don't remember anything for the next two weeks. I was in the ICU, liver almost shut down, on dialysis, life support, feeding tube. It was diagnosed as an unknown bacterial infection. Two more weeks in the hospital, and a week in rehab, I bounced back.

I did okay until this past year, when it has been one thing after another. With my last hospitalization, the ID doctor talked to me about my final wishes. She wanted to know what to do if I did not respond to treatment. Basically, the gist of the talk was that my body is wearing down, and there will come a time when no amount of antibiotics, or other medications will work.

Physically, I am doing better, but mentally it has been very hard. Horrible anxiety, flashback like feelings of being in the hospital. I don't know why this time it has been so hard.

I have been in four trials- Crixivan, TMC-114, T-20, and presently GS-9137.

I used to work in the hotel industry, graduated from Penn State with a degree in Sociology. Have four dogs, and want another one- Great Dane. Most of my family knows, and is supportive. Have a fantastic doctor and nurse coordinator.

Like to read, but have partial blindness in my right eye due to CMV, and it is hard sometimes. Like to cook, do paper crafts, rubber stamping. Do obedience with the dogs. That's all I can think of for now. Thanks for listening.

I live in Washington, DC. Was diagnosed in September of 1987 and became infected I believe sometime between November 1986 and then. Though looking back there was a guy in Germany in 1981 that could have done it but it seems I seroconverted in 1987 so I believe it was the summer of 1987.

When I found out my first t-cell count was just over 200 and no VL tests were being done then. I did absolutely nothing until 1988 when a doctor recommended a study at NIH for a new drug DDI. I was one of the very first to take the 250mg dose three times a day through an IV. That was for three weeks and I was released on Thanksgiving Day 1988. The meds were difficult to take then. Measuring saline in a syringe and adding it to a small bottle of powder, shaking that up and then extracting it with the syringe and mixing it with apple juice. Some years later they had a sachet which was just the powder that you could mix with water then later still a huge horse pill you had to chew. I was on this study about 10 years and through that time, well the last 5 years or so mainly i barely took the drug as it made me sick but I didn't miss any appointments. They had to have known based on blood work that I was not taking the meds.

Study ends in 1995 and then I have to start using my insurance and paying for drugs and DR visit co pays and such and so I have been pretty compliant with meds most of that time. I have been on a lot of different things and a lot I just couldn't take the side effects. Today I just take 3 pills once a day and have a VL <50 and T-cells just over 400. I work full time and really the only issues I have are fatigue. I can sleep 8 hours, get up walk the dog and have coffee and then about 2 hours later am ready for a nap. Maybe that isn't really an issue, but when I am at work and fall asleep at my desk it is since I really could be fired if the wrong person were to see that.

Otherwise I have no complaints. Thanks for the forum and thanks for reading.

Hello, I'm Richard, 42 years old and I live in Leeds, UK. I was diagnosed in February 1993 at the age of 27 following a routine test. I don't know who I contracted if off, neither can I remember ever putting myself at risk, but obviously somewhere down the line I must have done. I didn't start taking medication until 18 months ago, when I started taking Kaletra and Combivir after my CD4 dropped to 57 and my viral load was up at 650,000. I've never had an HIV-related illness, and keep myself fit and healthy by playing tennis. I play in a tennis league representing my tennis club. I'm open to my family about my status and get great understanding and support from all family members. I discovered this site a few weeks ago after a friend recommended it to me, and I find it very helpful and useful. I enjoy reading posts on here, and whenever I can, I do intend to contribute.

Thanks to us 'survivors' who are sharing their stories. We have been through a lot, individually and collectively. We have some new voices here so welcome to you ! It's also good to read the stories of some folks who have been around here for a while.

I want to thank those who have brought us this forum, Joe, Ann, Tim and the moderators. As long term survivors, it is indeed becoming a place we can come and share our stories and perspectives.

I feel connected to you all and look forward to reading more stories, both triumphs and hardships as the months and years unfold.

I am 49 years old, until July. I was born in Albuquerque, New Mexico, USA. In my very early 20s, I moved to Los Angeles, where I lived a rather randy existence (I had memberships to every bathhouse in L.A.)

I first tested positive in 1985. I moved back to New Mexico and went into a rather severe state of denial, aided by copious amounts of mind-altering substances. In 1992, a good friend talked me into seeing a doctor about my HIV after I blurted my status out during a particularly drunken evening at my local water hole.

I started meds in 1996, when my CD4s dipped to 440 something and my viral load jumped to 40,000. (Today, they wouldn't even talk meds at that level, but that was then.)

I started with Saquinavir, Epivir and AZT, but suffered rather severe side effects from the Saquinavir (Invirase). I tried to stick it out, but after two months, switched to Crixivan, which was very much easier to take.

As probably most of you know, I have been on the same regimen now for a few weeks shy of 11 years. Also, as most of you probably know, I am seriously considering switching to something else because of lipodystrophy issues.

I really haven't had many of the problems others have had. I've had a run-ins with kidney stones, lipoatrophy, anemia and a few other minor things, but nothing major like many others have.

I just want to thank each and everyone for your inspiring post. I am kinda a newbie. And the comfort I feel from long term survivors is a blessing.

I was with a guy for several years , he worked 7am to 4 pm , I worked 2pm to 10pm. We both got tested in the begining of our relationship , and we were negative. I was young and dumb , and running our relationship as if I were in the BRADY BUNCH, he was out sleeping with men and women. When I found out, I left, got tested and was diagnosed postive in 2004 at the age of 34.

In 1992, a good friend talked me into seeing a doctor about my HIV after I blurted my status out during a particularly drunken evening at my local water hole.

Allmost a similar situation here. I had confided in a friend, around January of 1986. We were sitting in the bar, i was pretty well plastered , and I had told , how I had tested positive a few months earlier.

Nothing is sacred.... It wasn't long before the entire bar knew, and thus that brought me out completely as far as my HIV status went. It was a difficult period of time. I trusted this guy to keep it to himself. But all the years later, and when I look back at it, I am not pissed. I ,( we)still see this guy from time to time) I am actually glad it went this way, of course looking back at it all those years ago, was a different story.

Unfortunately, and sadly, most of those that knew my status have themselves passed on...

I became infected with hiv in 1990 just before my 30th birthday while enjoying my 5th year of a so called monogamous relationship... I was tested for every std... in jan 1991... gonnoreah was presented to me from my testing... gave my soon tobe ex the boot... he moved to NYC and I met the most wonderful man but, broke up with him when I tested poz for hiv... my Dad, mom, sisters and two friends all were accepting to the news... my Dad said never give up... he's now deceased as well as my mom... so I presently live with my dog and will retire from my place of employment in a few more years... I never thought I would live this long.... cd4 1509... non-detectable viral load... herbalist.. exercise... eat healthy... 420 friendly... just wondering what I'm going to do on my next carreer... lol

Hi to all, especially the new comers... great site..super people with good information/advice. My name is Nick...I was diagnosed in Jan 1994 when I got sick and went to the Hospital and found out I had PCP...tested HIV+ cd=2 vl > 1 million( they don't actually count over 500K ) probably infected in early eighties .. started HAART immediately..been on Crixivan and a few other things since then.. Had a number of complications...MAC...infected disc in Back...severe Lipo ( very skinny) ..major anemia ( required transfusions for a few months) ..neuropathy.. and a nagging case of chest cough at the slightest exposure to almost any "germ"

I retired from the Military and worked for 15 years at a Major defense contractor...then got sick..haven't "worked " since.....stay very busy ..reasonably healthy...don't plan on dying anytime soon... I live a very nice place just outside of Dallas..on Lake Ray Hubbard..probably one of the "oldest" ( in yrs) guys on the site..68 in June...

Thought I would jump in the "LTS" pool here. I think I qualify. I first tested positivein 1990 when I was 26 -- and almost certainly seroconverted in 1989 when I was 25.I'm on the verge of 43 now, so I've been poz for most of my adult life, like many ofyou here.

I went to my doctor and got tested because a man I was dating "convinced" me toengage in unprotected sex, and I foolishly allowed it. After a few months, I somehowjust knew that I had been infected. I was right, even before I had the test.

Here's an interesting story of how I found out my results. My doctor never called,so of course I knew that couldn't be good. After 4 weeks, I finally stoppedwent to my doctor to ask for the results. When he pulled me into his office (notan exam room), I knew what the results were. Before he could say anything, I cuthim off and just said "the results were positive, right?". That was a long time ago,and even though I haven't seem that doctor in years, he really was one of thekindest, most compassionate doctors I've ever had. I can't fault him for not knowinghow to deal with a situation he had never faced before.

I've been very lucky, healthwise, in that I did not need to start meds until 2004.Fortunately, I've had a very good response. The "only" health problems I've had are fatigue, some issues with mental health / depression, and a few cases of shingles.

I live in Liberty Hill, Texas, which is near Austin, with my 2 dogs. I'm single -- havebeen for nearly 5 years. I live out in the country, and that's exactly the way I likeit. I work in the software development industry, which demandsmore time than I prefer to devote to it. However, keeping my health insurance benfefits is very important, obviously.

Anyways, I appreciate everyone's willingness to share their experiences and information here, even if it sometimes lead to conflict or disagreement. Truthfully,I'd be worred if everyone always had the same outlook.

Cheers,

Henry

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"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Hey all...I'm "30Years." I have been positive for at least 90% of my life being infected at 7 years of age. I have no problems and I am 33. I find it hard to fit in because I didn't get this disease by any type of behavior...but a blood transfusion.

Hey all...I'm "30Years." I have been positive for at least 90% of my life being infected at 7 years of age. I have no problems and I am 33. I find it hard to fit in because I didn't get this disease by any type of behavior...but a blood transfusion.

You fit in. All you need, is to be infected and you are. Welcome to the forum.

Diagnosed in 1986. Probably infected by 1981, when I was hospitalized for a week with 'mono-like' symptoms. The doctors finally diagnosed me as having CMV, a very-strange diagnosis for a person my age--at that time.

I started a blog a few weeks ago: escapaids.blogspot.com where I discuss and reflect on life experiences with HIV and cancer.

I had lymphoma in 1998 and two cases of anal cancer since 2001. Quickie advice, if you haven't been tested for HPV, do so, as it can get nasty. Finding a doctor who is not 'butt-phobic' can be hard, but it is so important to have the test done. The equipment used is the same they use to test women for cervical cancer. This equipment is not widely available and is also not in the comfort zone for some practitioners. However, the test can literally save your ass (and your life).

I am glad to see this forum for LTS. I sometimes feel like I'm in uncharted territory with HIV, so its very comforting to know I'm not alone.

I have been on disability since 2001, after having had lymphoma and anal cancer. I had a very stressful job, was trying way to hard to climb a corporate ladder, which I have since discovered led nowhere. So, I've been resting, focusing on my health and enjoying life since going on disability. I am hoping to get more in touch with my creative side.

I very much enjoy Second Life, www.secondlife.com. It's a virtual world and very entertaining. Since I live in the country, it is a great way to connect with people. If you have already joined, give me a buzz there, my avatar's name is Karim Marquette. I have a boyfriend in Second Life, who is ultra cool. No real life boyfriend, but I'm working on it.

It was Sept of 92 when my partner, of 7 yrs., had a month of being "sorta sick". Having already had a surgery for Chron's disease, he went to several docs, looking to see if that was the problem once again. I fell prey to the AIDS PSAs on TV at that time and went to the city health dpt. for an HIV test that December. As many of you can probably relate, I remember exactly the details of that day when the diagnosis came back. At 1:20 pm on Dec 26th, 1992, the nicest 50-ish nurse seemed quite taken aback by how easily I accepted the news that I was HIV+. Heck, I was a gay guy, it was right after the end of the 80's, of course I was positive.

Things went down from there. For the next two years, I watched as my partner got sicker and sicker. We both went on meds and Randy was in several trials. (Oh how I remember bundling Randy up and loading him into the car for our 50 mile trips to get to the Cleveland Clinic, hoping for some good news for a change.) Randy's illness aggressively progressed, while my biggest problem was that the AZT was killing me. Eventually, I had to quit it. One of us had to stay alive long enough to care for and bury the other one, and that chore fell to me.

I'll just skip all the details of those years except to say how horrible it was watching Randy suffering and, slowly but surely, wasting away. I should mention the callowness of our doctor though. At Randy's final trip to the hospital for IV meds, the doctor spoke with me on the phone. Abruptly he told me that they wasn't anything else that could be done, did I want to admit him to the hospital or take him home to die? Yikes! I have had to make that decision about my pets before; but at only 30 yrs. ago I couldn't believe that I was having to decide how best to let my partner pass away.

Hospice care hardly had time to even evaluate our situation, when 9 days later on May 25, 1994 at 5:55am, Randy passed away on a hospital bed set up in our living room, surrounded by our cocker spaniels, friends, and family. His mom, an LPN, pronounced him dead after he uttered his last words to me, "Love you".

I didn't mean to write quite so much about Randy, since this is a forum of Long Term Survivors; but I needed to get that out. Not only to keep Randy's memory alive; but to explain what a "survivor" lives with. Living with this illness hasn't been as hard on me as losing Randy, just shy of our 10th anniversary and his 30th birthday.

Within two years, I was hospitalized with PCP pneumonia after which I got the official AIDS diagnosis. Afterwards I ened up on disability to help cover the medical costs along with the meds. Dealing with multiple meds (at one time I was taking 32 pills a day), depression, and a ton of side effects, it wasn't long until I quit the meds. For a while I felt quite good, even though I was on a slide back down to another hospital stay with pneumonia. Then it was back onto new meds until I couldn't stand those side effects either. This up and down trend continued for nearly a decade. Every visit to the doctor, I was told how ill I was and that I probably wouldn't last another 3 months. More than once, I nearly threw in the towel. It was becoming a quality of life issue for me. Did I really want to continue living if it meant puking EVERY day, hives and rashes, walking into the walks like a drunk man (that was the Sustiva), and unable to have a life outside of my home? My family and friends all tried to help; but what could they do solve my biggest problem? No one could bring Randy back to me.

Luckily, a rare visit to a local agency actually started what I can look back at now and call a turn-around. This social worker explained that there were other doctors in my area now. No one (patients, social workers, or the hospitals) cared much for the doctor I was seeing. Although I wasn't actually one of her "cases", this worker got me set up with another doctor. What a blessing he was! Even though I got tried of all the blood work, he monitored me closely as we went through the meds trying to find the right combination that would work on the HIV and keep the side effects down to a minimum.

Being able to handle the meds made a great improvement in not only my physical health, but also my emotional health. I finally gave up my role as "widower", and took my best friend of nearly 18 yrs as my partner. Jim had wanted this much sooner; but I was too busy being depressed, sick and dying to want to bring into his life the grief that I had suffered.

Ah, and love really can work wonders. When I look at a chart of my Tcells vs. viral load over the last 15 years, it's staggering. Most of the graph is filled with spikes as I went on meds for a while and then back off making my vial load jump. Until Dec 2005, that's when, on a trip to see my family, I finally committed to a relationship with Jim. Since that point the graph has taken a dramatic change. My viral load has stayed nearly undetectable and just last month my Tcells went over 300 for the first time in a decade. And I'm only barfing a couple of times a month now! WooHoo!

Sorry for such a long post, but I'm glad to still be here and to be able to even post. If you really want all the details, I've been keeping my own blog site since 1999 at http://reigningpages.com/leatherman. Now I've got to get back to my latest project - http://reigningpages.com/pooltag (check out the pix from 2006). This Summer for a second time, Jim and I will be hosting "Pooltag" which is not only Jim's birthday party; but a contest amongst our friends where we build floats, using pop bottles, and try to make it across the pool. Laughter and love are the best medicines!

Hi all, I just signed in tho I'd been getting the emails about meds for 6 months. I like this forum, I've outed myself on other men's forums as I want everyone to know what they're up against, I don't want any nervous ninnies getting upset with "The Discussion" afterwards in post coital bliss.

I had to be infected back in 81 or so when my lover at teh time went to NY and came home and a month later was sick, undisclosed infection. 2 months later I was the same way, coulsn't get off teh couch tho we'd read about the gay cancer we just hoped not. I left him in 83, the asshole was doing coke at home while self emplyed and became a paranoid jerk. Woof just had to get that off my chest.

I had been a landscaper that maintined beautiful yards in Laguna Bch but now it became meanial maintenance jobs once I moved to San diego away from my partner who didn't understand why I didn't want to be friends with him. Think outdoor janitor with a nasty supervisor around ever corner. I moved up to Santa Barbara to live with friends that had a maids room in a old house they'd just bought. I found the best friends I've ever had. I flourished, took drafting and art classes and decided to go to grad school for Landscape Architecture. got all A's in 3 years. Tho I had a wild fling with a bi man in grad school in 90 I always wanted to use condoms he didn't. I tested positive in 91 finally facing the fact my ex and best friend had died. I had to tell the bi guy and he tested poz too. Told his wife it was from needle sharing, thankfully she was negative. I had to move for a new job back to Santa Barbara.

2 years later the job was over and my health became bad and I'd been taking AZT. I had Pneumocystus and KS. Dr at Kaiser got me on the new cocktail in 95. I moved to LA because SB was too expensive and a dead end for single poz man. Best decision ever. I love living in LA, lots more men to date. I regained my strength went back to school, became more of an artist, tried a few jobs but they didn't work out. I just had bad karma in jobs and stress. Love school tho. My parents think I'm just fine and should get a job. I say that with the stress in last 2 jobs reduced my Tcells by half and i lost weight running around frantic on the nursery job. If I go back to a stressful situation I'm going to die faster, do they want that? Thankfully I have a stock portfolio with some money my dad gave us kids and am now trying to shift it all to high dividend stocks for added income. Iv'e found no jobs that provide insurance and I don't want to give up my medicare, it keeps me with Drs I like.

Lately I've come down with Carcinomas on my scalp, they have to take these cancerous bumps off and sew me up, and a month or two of healing. It's a freaky thing doing it with local aenesthics, the first time was a night mare come true. Now I have even more, about 6, and Kaiser is so slow to remove them, I think of them as alien spawn. They don't know if it's my years in the sun or part my low immune system. Or both.

But now back at school taking art history and printamking, my etchings are of orchids and some figures and some abstract. I'm resigned to being a poor artist, but I have a fab apartment in a nice area, friends I get to go do things with who are poz also and the added bonus is last summer I met a guy online and we've become an item. I only get to see him every other weekend, sometimes more often, and magic happens when he walks in the door. He's poz too. I can't believe at 52 I fucking fell in love full on heart palpitations, pit inthe stomach can't think of anything else LOVE. And he knows that now, I tell him every chance I get. I even cry at old movies when two finally get to really kiss and it's teh real thing. I''m such a woose.

First off, welcome to all you guys and gals who have entered the forums through this thread.

Since I am one of the Bloggers of this site, my life story starts in August of 2005 in the Blogs. If you want to see a life of excitement and wonder, please have a look see. The link is at the bottom of this post.

I was born in 1947 in Lynwood California, to a minister, and his incredibly beautiful wife. Life started quick and that is covered in the Blog.

I was infected in September of 1983, and worked for Eastman Kodak for another five years, when I left and purchased a Kenworth and hit the road to live out a long time dream. I stayed asymptomatic until 1994.

In January 1988, I met the man of my dreams, and started the relationship I am still in today. We live in Southeast Arizona, where I am very busy as the resident activist, and write a monthly column called "Living with HIV/AIDS" in a Mormon owned paper. The owners felt it was very important to let the people in their circulation to know about HIV so I was invited to do so in January of last year.

I have started and closed two AIDS Service Organizations, and am a member of the Arizona State Advisory Council and the ADAP Formulary Committee. ( I have a difficult time with the funding side and never found someone to do that for free )

I have really struggled with HIV, and suffer a load of pain, but my Sweetie keeps me grounded and going forward, which is all anyone could ask of a partner.

Most of my life was in California, New Mexico and Arizona, but the formulative years were in East Africa.

Once again, welcome to all you new guys, and I trust you will find this site informative and entertaining. I have been on board here for about three years.

Love,

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I live in a small town in Indiana and have been HIV+ since 1988. I'm in recovery, but I didn't get the virus from the needle. I was infected by my first husband, who died when I was in treatment in 1989. I almost died a couple times, back in the day when they were megadosing people with AZT. There are so many more medications out there now. I'm finishing a BS in psychology and I hope to be an addictions counselor. Wow, this wouldn't have been possible 10 years ago. Glad for the new medications! I just wish they had a good support group for people with HIV here. It gets rather lonely!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Hello, my name is William. I’m 47 and 355 days old and I've been positive nearly 13 years. I was infected in the usual way, sort of. There is a reason they call it "safer” as opposed to "safe" sex as I'm living proof that although the risk may be small, you can still get infected when safer guidelines are being followed.

While my viral load is currently undetectable and my T-Cells have remained stable, I have had some complications. The meds and the virus have given me gifts that keep on giving: neuropathy, diabetes, heart failure, GI problems, memory problems, depression, and, worst of all, FATIGUE. There are probably more complications, but as indicated, my memory aint so hot these days. I've been on disability and have no perception of the time that has elapsed in the last ten years as most of it has been slept away.

I'm always amazed when people say things like "being positive improved the quality of my life.” They should count their blessings because they are very fortunate. While their positive attitude certainly helped shape the quality of their lives, it is by no means a guarantee, as I used to have a positive attitude too (even after all my complications). I don’t remember exactly when that attitude left on its one-way excursion to destination unknown. That destination must be pretty nice and I wish I had gone as well, but my disability insurance is just low enough so that I have now run through my entire life savings. If you are going to be sick, I strongly recommend being in a relationship, if only for the financial benefits.

Maybe it's the city I live in, but I have a pretty low opinion of most of humanity. While I cling to the notion that there is some goodness in the world, I've seen and been affected by, some of the most horrible human beings imaginable. Doctors who should not be practicing medicine, people who out of jealousy have sabotaged potential relationships, and friends who weren’t really friends when I needed them. Wait! I cannot forget the people at my health insurance company who in their endless denial of claims, continually make my life miserable. There would be a special place in hell for them except I don’t believe in such things.

Now that I’ve written this post, I understand why I haven’t before. To anyone that may have read this, I apologize. This is really a downer.

My name is Joe, I am 52 and I was infected in March of 1985. I have lost more friends than I will ever remember and that loss is what fuels my passion for advocacy and is one of the reasons that I joined these forums in 2002. Long story short: I have been in clinical trials and test drove some of the early drugs and just for the record, there is no viler tasting substance known to man than the liquid version of Norvir. I have taken 16 of the current anti-HIV meds with my most intense regime in oddly enough 1996, which required me to take 96 pills per day.

Being much too stubborn to die, I have survived about 14 hospitalizations, had PCP six times and just about every OI in the book. Still, I came from my low in 96 (4 CD4s, viral load off the charts and 9%), and today, while taking only Truvada and Viramune (3 pills) I have 746 CD4s, I am undetectable with a 28%. Through my 23 years of living with HIV, I have learned that you cannot take anything for granted and I am grateful for each and every day and some days are certainly better than others.

I was born in Toronto, orphaned at 4 and adopted from a group home by my wonderful parents, who took me home to grow up in Detroit, Michigan. Being a "recovering Catholic", I suppose you could label me confused, in the early years, as I had a 9-year marriage that produced my wonderful 22 year-old daughter, Kate, and I did not really come out, as being gay, until my late 20’s. It can be so sad when your fear of abandonment causes you to do things that go against your grain. I made some terrible choices, hurt some very good people, but I had nobody to show me the way.

My first relationship was with a negative man, who refused to coddle me and forced me to stand on my own in dealing with my infection. My declining health and his increasing fears of HIV infection forced us apart after four years. It would take a couple of more years, with my second “partner”, until I determined that he was a drunk, drug-addled sociopath. One restraining order, three months in jail and the threat of six years in jail, sent him packing back to Michigan, after we moved to Fort Lauderdale in 1999. Fate must have taken pity on me, when I found my husband, Stephen in 2000. We have been together for eight years and I now know that the key to any relationship is in understanding what you will not tolerate and all the rest is negotiable. Relationships are not competitions and the sooner you accept that, the sooner you can attain contentment.

I have been an AIDS poster boy from day one. Newspapers, radio and television were a very hostile environment in the late 80s for poz people. I have held AIDS vigils for decades, run two AIDS Service Organizations and have spent countless hours, trying to educate the masses about the reality of HIV. Sadly, little has changed and even though we are 25 years into this hell, we still have people dying from lack of care, because their lives just are not worth enough, at least in the eyes of the US Government. HIV services have been flat funded for six years and that lack of funding HAS DIRECTLY KILLED DOZENS of members from our community. As you can see I remain as angry today about insufficient HIV services, as I was in 85 and it is the memory of all those, who we have lost, that will forever fuel my passion.

I share my hopes, dreams and horrors to help others realize that you can and will adjust to HIV, but you must be an active participant. I believe you are ultimately responsible for your health, but you can never have too much support. I welcome you all to this forum and I hope you will enjoy this special forum, because the amount of knowledge, compassion and hope, contained in these very special people, is what support is all about.

I hope you find these forums to be as inspiring as I have and I welcome all of you to our AIDSmeds family.

Thanks everybody for your introductions. It's good to see some new names and faces among the old members of these forums.

I find the stories here to be quite remarkable as we have come so far in spite of having been diagnosed as being HIV positive, many for 20 years or more. We are a remarkably strong group of people here and I tip my hat to each and everyone of you.

Thank you to Joe for coming forward with the idea for this forum. Thank you to Peter as well. It is already a place where we older and long term survivors can come and share of our stories, fears, joys and concerns.

I'm Alan, 50 years old, diagnosed HIV+ in 1987, "full blown AIDS" (that's what it was called then) in 1991.

I'm a true Lazarus Syndrome Long-Term Survivor. Unlike Lazarus, who came to from the sleep of death in perfect condition, I had some major health issues when the protease drugs came along and somewhat began to restore my immune system: Addison's disease, DVT and blood clots, and most significantly a heart damaged by bacterial endocarditis.

Those early years of AZT monotherapy, setting the alarm on the pill box, fighting to keep from throwing up at work....all that seems like a bad dream to me now. I have not been hospitalized since 1999 (crypto) and my virus is undetectable and T-cells in the 400-500 range.

I originally came to AIDSmeds seeking to connect with other LTS, so this new forum is like an answer to prayer for me. I never take anything or anybody for granted anymore, and I try to enjoy every day that I'm given. I have a wonderful partner, family, friends and co-workers who are very supportive to me.

I still harbor a lot of anger and resentment about everything AIDS has stolen from me, and it's a constant struggle to keep that in check. I try to channel it in positive ways, but am not always successful.

Going to Montreal last summer for AMG was a dream come-true for me, and if anyone had told me in 1996 that "ten years from now, you will travel to Canada and walk around and have a wonderful vacation" I would never have believed it. I consider myself and my life a miracle, and it overwhelms me at times. The only way I know to cope with this is through gratitude. At the end of every day, I say "thank you".

With love and appreciation to all my fellow LTS,Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Hi All! I am a long term survivor. I was tested serio-positive in 1988, almost 20 years of my 54 years. I live in Houston, Texas. My viral load has been up and down. Recently I tested 50,000 viral load. I was put on the study drug TMC 125 and Prezista. I went to 1,000 viral load in a very short time. I hope to stay on this and make it work.

My name is Allan. I'm originally from Brooklyn, NY, but I've lived in the Bay Area for the past 29 years. I was part of the big gay migration to San Francisco in the 1970's.

I was diagnosed HIV+ in 1988, but I"m pretty sure that I acquired this virus in June 1985. I've taken most of the drugs that are currently available and developed extensive drug resistance over the years. I'm still dealing with the effects of neuropathy, which was likely caused by being on d4T for two years in the early 90s. I've had Sculptra and PMMA treatments to help correct facial wasting. (I'm very happy with the results.) My current regimen consists of Sustiva, Prezista/Norvir, and the new Merck entry inhibitor. The combo seems to be working.

I went on disability the day after my 47th birthday in 1995. (I thought I'd make you work to calculate my age.)

I live alone in a small house in Oakland, CA, which is my sanctuary. Sometimes my sanctuary shakes in rather menacing ways, since I am just a mile or so away from the Hayward earthquake fault. I have some very dear friends, but I spend a good deal of time alone, including a few hours a day at the computer reading online news (especially the NY Times), researching HIV-related issues, and visiting these forums.

I'm looking forward to meeting other forum members this September at the AMG in San Francisco.

Wow, some really emotionally intense stories in this thread. But inspiring. My own story is not nearly so uplifting, though. Almost boring, really.

I'm 44 and was diagnosed in 1996 so I've lived with HIV for 11 years now. I don't know when I was infected for sure, but it had to be before 1994 since that is when I met my significant other. We've been together for almost 13 years now and he's HIV negative.

I found out my status in 1996 when I drove myself to the ER because I couldn't breathe anymore and had had a low grade fever for, oh, about a month or so. Turns out I had severe bilateral PCP pneumonia. I was almost on death's door. My CD4 count was 46. I was EXTREMELY lucky in that I had just signed up for the company insurance plan about 2 months before this.

The doctor that I had in the hospital was an a**h*** though. He delivered the positive HIV test result by telling me that I had AIDS and "I really hope you like your current job because you're stuck with it for the insurance for the rest of your life" and out the door he goes.

Luckily, one of the partners in his practice with more experience (and some actual human compassion) took me on and started me on the HIV meds. I don't even remember what my first combo was, but it worked for about two years and then the virus started to break through. At that time, he referred me to a specialist here in Charlotte that I've been with ever since. He's an awesome doc and I've been very lucky. I've had my share of side effects including kidney stones, stratospheric cholesterol, wild hallucinatory dreams, etc. but nothing so drastic that I couldn't get through it. After 11 years, and some diet changes and fiber supplements, and Tums, I'm even starting to get a handle on the reflux and the wild swings from constipation to fire-hydrant style diarrhea.

Basically, I take care of myself as best I can, eat right, exercise, blah blah blah. And make sure I enjoy myself as much as possible. But when I get down, I don't kick myself for being negative. I'll take a Saturday and lie around the house eating ice cream if that's what makes me feel better, haha.

Its amazing to read other peoples stories, and get to know them better. I was infected 26/3/01...I can be that specific because i'm the original one f**k wonder. I was in a long term realationship and was unfaithful,once. it turns out the guy who I slept with knew he was positive. I'm STILL angry with him, but also have to take responsibility for not using a condom. I realise compared to some of you guys I'm a relative newcomer, and finding his site has been a lifeline, the unselfish help, humour,practical advice and kicks up the arse have kept me as sane as I'm ever going to be! i'm on meds now, since an OI last Sept, and its been hard...like a new diagnosis, but I'm getting there. As a white hetero female it still feels a little lonely, (but hey, if that means less infections, I'm happy that way), but I hope it doesn't matter what sex/age/colur I am, i'm just one of the 'family' i've adopted here, and I hope I've at least made people laugh.I'm trying to get on with my life right now, looking into more education, maybe some part time work, so I'm not around as much, but I think of this place a lot, and a lot of this placeJox

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I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

I was infected 12/16/89 by my partner/husband - when we finally tie it in Canada. How am I certain of the date? I had been celibate for twelve months (and was negative) and after meeting the person I was meant to meet, I found out he had HIV. The condom broke that night and for the first time in five years, I called in sick for five days after I got what I thought was the flu three weeks later. The strange thing is, I was not mad or upset. I knew this was where I was supposed to be.

We moved to Atlanta and I finally got a test in 7/90. It came back positive. I did not cry or get pissed off. It was what it was. I guess, I knew I had more in my life than I could have hoped for. I asked the "big guy" for three years with this man and I now have seventeen. No, it has not been a fairy tail - no pun, but a good life.

My partner is still HIV+ and I have AIDS. Ironic since he has been infected since 1988, but he is a type B person and I am type A. Stress is a factor. I did not start meds until late 2001/2002 after PCP, kidney failure, C-Diff and severe PN. Why? My former Dr. did not think I needed to. Advice is listen to yourself.

Today some many years later, I have high T's, <50 VL, a good percent (42-47) and my biggest issue is the side effects from the AZT and Norvir. Nothing like skinny arms and legs and planning your day around available restrooms that are clean.

Well that is my short version. I am lucky and thankful to still be here with my partner.

My name is Herman. I am 51 , infected 1983 and diagnosed in July 1987. I live in Belgium.I love long walks with my Jack Russell, Lola and am fond of oriental cuisine.Care-taker is the word most suitable to describe me. And mister "smile" BUT....One week ago I was in a dark place from which I thought I would never escape.But, I also am a sufferer of the so called "Lazarus syndrome".

Anyway, I am glad I can introduce myself to those who don't know me.

As a flight attendant I was travelling extensively around the globe for 18 years. The US was my second home and of course I enjoyed the gay clubs in NYC and SFO. And the wild nightlife. In 1983 I was in hospital with an inexplicable infection, sky high fevers for over a week.It was my seroconversion. The diagnose came in 1987. My GP called and said : Herman, you liver is ok, but you have that new disease, AIDS. (sic) 3 days and some panic later I decided my life was to go on and I continued flying until PCP brought me down in 1995. I had refused all medication until then, a decision that very well may have saved me.

I started on AZT and have since taken all possible combo's. Had multiple side-effects, wasting and PNPThe orange fluid Norvir was the nastiest and the Sustiva the most devastating ( I had hallucinations and freaked out on it). I think it was the Norvir that caused a toxic hepatitis in 1996.My lowest t count was 17 and my highest viral load : over 5.000.000 ( 5 million) copies per ml³.Of course I lost my wings and also 150 colleagues to the plague.

I met a new love, Jean-Pierre, who promised me to take care of me when my time would come. He died soon after those words, from a heart-attack, at the age of 32 .My new partner and I ( who were the first gay couple to get legally married in Belgium in June 2004) started a Wellness Center in 2000. I think I wanted to prove myself that having had AIDS would not stop me form being a businessman. My business was booming, until a burnout forced me out of work for 6 months, resulting in a painfully long sale and just narrowly escaping bankruptcy. I lost all my savings and I am in debt. But my CD count is at 781 , VL < 50 since 1996, and I am now on a non PI regimen. This is the first one I have no side-effects from.

My husband fell in love with a new guy during my burnout, so I am physically getting divorced soon.I have been to all the AM gatherings. Toronto, Nashville,Amsterdam and Montreal. I think I have met around 60 members, face to face. AND YOU ALL HAVE CHANGED MY LIFE.I have fallen in love twice here. I met the first guy in Toronto and Dan J and I started dating in Montreal in August 2006. Not an easy road to travel.

Just as Joe Killfoile, I suffer from a mental illness, called depression. My first one came at age 13, and I have had several ones since. It was just before being admitted in July 2005, that I found this Forum and 2 weeks later I was in Toronto, meeting all these wonderfull people. It changed my life.

I am currently recovering from my nastiest depression ever, due to a accumulation of causes. And I need you all. Without this family I would long be dead. No doubt about it.

It is my dream to live in the US one day. But as long as the laws are still prohibiting me to enter legally, being HIV+, I will hopefully be able to keep visiting my close friends in the US and maybe the gathering in SFO.

We are all here, because we are fighters. And let me say that I admire, get inspired, feel loved and love this family, more then anything in the world.

Herman

« Last Edit: April 23, 2007, 11:35:21 AM by heartforyou »

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Diagnosed in 1987 and still kickingKivexa (Epzicom),Tivicay once daily.

Hello,New to the forums, but have been reading them for some time. I live in Saint Louis, and unfortunately i am still single...but thats another story.....lol...I am a Scorpio...maybe thats the problem.....buts its like being uncut ..I wasn't given a choice in the matter......lol....I love people and have a generous heart or so I am told...hmmm maybe thats another reason I am still single.......anyway, just wanted to say hello to everyone and if I can be of help to anyone at anytime...let me know....I am educated, or at least my degree says I am and I am not exactly fugly in appearance...six foot...156 lbs...brown hair, hazel eyes...yes i wear glasses ..maybe another reason Im still single..lol.....

Pilot...remember...your not as dumb as they think they are smart........

Hi, everyone. My name is John, I am now 51 years old. I was tested positive in September 1986. I was living in Houston, TX at the time. AZT was just beginning to be prescribed, but my doctor at the time said "wait, something else better will come along." I waited until 2001 to begin drug therapy. At that time my t-cells were "3" and my viral load was 500,000. Up until that time I had no major symptoms, some diarrhea, but it was manageable. In June of 2001 I noticed spots on my legs which were diagnosed as KS. I freaked out and started taking combivir and sustiva (which was quickly changed to viramune).

It is so good to see so many survivors actively taking part in this forum. The stories are amazing. Even in L.A., it is easy to feel alone, so I know that many of you who live in small towns or in rural areas must experience the feeling of being the "only one" at times.

Hi All, after being alone with AIDS for so long, I forget what I use to do. I was infected July 1985,am a 49,heterosexual female,have 3 grown kids, going on 5 grand kids, I HAVE WANTED TO START AN ALL WOMENS LONG TERM SURVIVORS GROUP, BUT DIDN'T KNOW HOW.SS I USE CAPS SO I CAN SEE BETTER. ANYWAYS, ITS GOOD KNOWING I AM NOT ALONE, HOPE TO MEET FRIENDS. JUDYI HAVE BEEN ON TELEVISION,AND HAVE SPOKE AT HIGH SCHOOLS,ETC. I JUST NOW AM TO TIRED TO DO ALL I WANT TO DO,,, ANYONE FEEL LIKE THAT? ALSO JUST GOT OUT OF HOSP LAST JAN 2007 FROM A 3 MONTH STAY.HAD ENCEPHALITIS. ANYONE EVER GET THAT? YUCK. CYA SOON, JUDY

Hi All, after being alone with AIDS for so long, I forget what I use to do. I was infected July 1985,am a 49,heterosexual female,have 3 grown kids, going on 5 grand kids, I HAVE WANTED TO START AN ALL WOMENS LONG TERM SURVIVORS GROUP, BUT DIDN'T KNOW HOW.SS I USE CAPS SO I CAN SEE BETTER. ANYWAYS, ITS GOOD KNOWING I AM NOT ALONE, HOPE TO MEET FRIENDS. JUDYI HAVE BEEN ON TELEVISION,AND HAVE SPOKE AT HIGH SCHOOLS,ETC. I JUST NOW AM TO TIRED TO DO ALL I WANT TO DO,,, ANYONE FEEL LIKE THAT? ALSO JUST GOT OUT OF HOSP LAST JAN 2007 FROM A 3 MONTH STAY.HAD ENCEPHALITIS. ANYONE EVER GET THAT? YUCK. CYA SOON, JUDY

Hi kids. I picked up The Gift in 1979 or 1980, which makes it almost 28 years that I've had HIV, as well as Hep C. I was diagnosed at the NYC health dept on Ninth Avenue back in 1988 after I decided to get tested. As wth all of us, its been an interesting journey, to say the least, and I like to think that it has made me a more compassionate person over the years.

I'm still married to my still HIV- spouse of 20 years, but that is another story for another time. Suffice it to say it hasn't always been easy, but I am not complaining. I'm still astonishingly healthy and I've made a lot of friends, gay and straight, black and white, male and female, who are here with us. Like all of you, I've lost many friends over the years - some to HIV, some not.

I've only been posting here for a short while, but I've found it helpful, and its amazing how many terrific people there are here who are so supportive. It truly is a blessing.

Hi my name is Bill I was diagnosed HIV+ in 1985 at age 23. Back then there was little anyone could do it was all so new. My partner finally got tested in 1986 in less than a year he died. We had just bought a house 6 months prior to him becoming ill and we ended up spending everything we had on his medications and huge medical bills. We tried to sell the house but the market was down and we owed more than the asking price so I made the decision to let the house go to pay for his medical expenses, money ran out very fast.

His death was a major turning point for me. I relocated to the desert to be with my current partner of 21 years he is still negative and he has been my rock. If it was not for his love, support, connections, getting me in to see the right doctors I know I would not be here today. I knew that if I were to have a small chance to live I would do everything my doctors told me to do; including setting an alarm clock to take pills around the clock. I feel very lucky to have stayed one step ahead of the game with medications and having very few problems. The 1980’s to me was an ugly time in my life it is something that I will never forget.

I am a certified pharmacy technician I recently had to leave my position at the hospital to be a caregiver to my partner.

I hate that work and school have kept me from visiting these boards recently.

There are lots of things I want to be called or known for besides being a “long-term survivor” or a “long-term non-progressor” with HIV. It’s part of who and what I am, but it only defines me in a very limited clinical manner and illustrates only one of many ways I have defied the odds in the Big Game of Life, generally with little to no action of my own or totally in spite of my willful neglect. I am first and foremost a strangely fortunate pig-headed fool. Then, the son and grandson of breast cancer survivors, the survivor myself of 20 neurosurgeries in for under 5 years (25 in 15 years), including a coma and six months re-gaining the use of my body for a spinal fluid shunt implanted when I was almost 15. Then, the kid who went to college at 15 and barely got by between medical drama and sexual intrigue, only to wait til 41 to start grad school.

Accepting that I’ve been waging an internal war against HIV for nearly 25 years brings up a variety of choices and experiences that I’d rather forget, even if each one is part of the unique course that led to my peace in the present moment. Being sexually active with chronological peers since I was 9 years old (1974) and with adults since I was 14 (1979), I may have been infected before or soon after my early brain surgeries, though the only illness resembling seroconversion syndrome which I ever experienced was in the fall of 1982, shortly after being treated for syphilis, through the spring of 1983. Nasty night sweats and swollen lymph nodes all over my body, things I had heard of from friends who developed KS or PCP, but I kept my head down and hoped for the best. By the time I graduated college in 1985 at 20, over fifty friends and dear ones had died of what had finally been labeled AIDS; and within two years that number was over 200. The best didn’t mean losing my mentors and my friends prematurely, did it? The shrink who handles my ADD meds shrieked last summer on our second meeting “You seem to be doing well for someone who should have post-traumatic stress disorder to the n-th degree!”

For a few years I dabbled on activism in many forms, but the question always came up “Do you know your status?” I knew already deep down inside, but I was paralyzed by fear. Fear of the impact on any future work on my spinal fluid shunt. Fear of being shunned by friends and family. Fear of losing health insurance. Fear of wasting away to death. Even when AZT and other early drugs we fought for came along, I didn’t see the up side of having an HIV test, not even after entering what would be a 12-year relationship with a man who would remain HIV-negative when we parted.

As I’ve written before, what pushed the issue of testing was contracting hepatitis A asexually in 1998. Having my HIV status documented was a relief, and the issue was finally out where my doctors and I could do something about it. My body’s dramatic response to HAART gave us the first indication that my history with HIV had to do with more than dumb luck and blissful ignorance. I resisted my doctor’s encouragement to get involved with clinical studies for nearly seven years, choosing instead to engage in experiments of my own—with my doctor’s involvement—by keeping pill burdens down and choosing creative regimens. Over two years of remaining undetectable on Ziagen monotherapy was the next major pointer to a host factor giving me an extra fighting shot against the bug.

When I finally chose to prepare for a clinical trial at NIH, stopping meds on the morning of October 1, 2005, was by far the greatest leap of faith that I had taken since popping my first AZT pill in June 1998. When the researchers found six months later a genetic characteristic connected with a vigorous and potent immune response to HIV, it took days to fully digest the news. It took weeks to forgive myself for not getting tested back in the 80s or early 90s. Back then there was little hope at first, then came meds that failed easily. Having been deprived a physical and emotional rollercoaster in the dark years of HIV still doesn’t seem a just tradeoff for potentially infecting other men along the way. I stay active as a research volunteer to help lighten the karmic baggage, I guess.

And I detest the word “miracle” or anything like it being applied to my condition of being off meds over 80 weeks with a negligible viral load and “healthy” CD4s—two silly 19 year-olds gave me the genes when they created my first few cells. While I am by and large contented, sometimes the “blessing” feels like a curse.